Should Genealogy Websites be BANNED because they ‘Threaten the Anonymity of Sperm Donors?’

The world today is struggling with learning to use advancing technology and also with all sorts of issues dealing with personal privacy. Sometimes those new ideas are diametrically opposed. For instance, which is more important: the right to learn about your ancestry, especially when inherited medical issues are involved, or the right to personal privacy?

A bioethics expert at Ghent University in Belgium claims that personal privacy outweighs the right to know who your ancestors are.

Men in the United Kingdom were allowed to donate sperm anonymously until 2005 and could now have their identities discovered by people researching their family trees. This, according to Professor Guido Pennings, a bioethicist at Ghent University in Belgium, constitutes a violation of the father’s privacy. He made the comments in the scientific journal Human Reproduction.

In the article in Human Reproduction, Guido Pennings writes:

“Anonymity is a multifaceted term. Anonymity is rarely eternal or absolute. The use of genetic databases increases the risk of identification of previously anonymous donors. Searches through genetic databases jeopardize the privacy of people who did and did not register on them. Three types of searches can be distinguished in the context of gamete donation: offspring looking for their donor, offspring looking for donor siblings and donors looking for their donor offspring. All three types of searches violate the rights of recipients and donors. It is argued that despite the existence of genetic databases, anonymity maintains the same function as it had before: it expresses a wish for distance and privacy by both donors and recipients and, even if not enforceable, should be respected by all parties in good faith.”

What do you think? You might read the article by Sam Blanchard in the Daily Mail at https://dailym.ai/2KZww6j and also the scientific article by Professor Guido Pennings in Human Reproduction at http://bit.ly/2UPIa8k. (Like most other scientific journals, access to Human Reproduction requires payment.)

The donor can maintain anonymity by not uploading his DNA so that it can be located. Of course, should a close relative get tested and post the results on a website a searcher could get a close match and then find the donor by a process of elimination – but can a guarantee of anonymity given to one person be extended to cover relatives? Perhaps, if they explicitly make themselves part of the agreement. But then more people are aware of the ‘anonymous’ donation, and that rather defeats the object!

This unintended effect does not only apply to DNA – other advances such as the releasing of census records and other historic information can have the same effect.

We can never know what might happen in the future which could – with hindsight – affect decision making in days gone by.

Of course, the original agreement between the donor and the clinic remains in place. But no agreement made could bind an unborn child, so you could argue that a DNA search is just a short cut. It was always a possibility that a child could find their donor father by other means.

It would be interesting to see what the ‘declaration of anonymity’ actually said. If challenged, I expect that a court would hold that it could only relate to technology/processes at the time that it was made and could not anticipate the future.

This is a very slippery subject that has not been well thought out. I first started thinking about the consequences of these databases and all the searching and linking tools that have been developed when a woman who had been put up for adoption contacted me because we linked at the 2nd cousin level at Ancestry. I am almost 100% certain I know who the father is, but I don’t feel it’s my right to “out” him. He has not put his DNA out on Ancestry and has not agreed in any way to having his DNA available for a search of this sort. However, by putting “my” DNA out there I have also put some of his, but without asking him or getting his permission. This issue is going to end up in the courts sooner or later (not my specific situation, I hope (!), but this whole issue in general).

My DNA test and DNA tests of all the various sibs and nieces, nephews down the line turned up startling information. The paternal line I had considered rock solid (my Dad’s surname ancestor) was not ours. What to do with that information, except try to figure out who we are actually related to genetically and also possibly to uncover what happened at the level of the genetic break. This is just normal human need to understand and accept, not a battle over access to info or (grin) a flaw in the paternal lines I am following. To be specific, I asked a number of people who are apparent genetic 2nd and 3rd cousins to help me resolve the historical inconsistencies in my research. They all refused, politely, but with clarity: “We do not want you in our group; we do not want to acknowledge you as family at all”. As a formerly inclusive person myself, I had to stop and reconsider what is important to me. Mostly, I just wanted to connect all the dots, understand all the whys and wherefores that brought me/us into the world. It really isn’t critical self-information at all (barring medical issues). I know who I AM with or without their co-operation. I just miss their unity and somehow also have to respect their separation. That is apparently who they are right now. A shift in their perception is always possible, but I will likely be long gone and no longer curious. The many descendants of our included and excluded “DNA cousins” will hardly know the difference! And in the not too distant future, after our technical ability to manipulate and recombine genetic material in the lab becomes the new standard, genealogy as a practice and as the primary focus of kinship will probably become irrelevant, immaterial (or even quite impossible) anyway.

These people donated in order to help others have and raise children. This was a selfless act, there was no benefit to the person donating, financial or otherwise. The only condition on this donation was anonymity.
That condition should be respected.
Of course they might expect people to come looking. But they might also expect people to respect their anonymity and stop looking.

There is most definitely some financial incentive. People have been getting paid for sperm and egg donations for a long time. There are some individuals who donate eggs/embryos, but it is far more common for individuals to be paid for their donations than for them not to be.

I can understand your concern – but how does a child conceived as a result of a sperm donation know this was the case? Unless they are told by parents or others, I doubt that there is any other source of that information – and the donation could have been an informal arrangement so not documented anyway.

I can only see the anonymity request being brought up when child contacts father – and by then the cat is out of the bag. All that could be done then is similar to the scenario in Mazie’s posting – a firm but polite ‘do not contact me again’ which may or may not be respected.

Maybe birth records could be annotated, though that won’t stop a determined searcher and would probably raise more family issues as well as breach the previously believed parents’ right to privacy.

Given that the issue of anonymity (in the UK at least and presumably only for ‘formal’ donations) expired in 2005 creating a database and matching it to the Birth records would be a nightmare.

Sadly I don’t see any solution that could be acceptable to all parties.

To my mind, their father is the man who was there with them through the challenges of childhood and adolescence. He may not have been the sperm donor, but he was the one who supported and cared for them. Important as biology is, it isn’t everything.

I can attest to the delicate nature of this from personal experience, when I reached out to a close DNA match. That conversation led to the revelation of a family secret, and a dilemma for those involved. It’s a sticky wicket from that standpoint.

However, genealogy data is primarily extracted from public sources, and to prohibit the publishing of such information would be tantamount to censorship, or a violation of free speech. This isn’t just about an individual’s quest to learn about their ancestors.

I have had my DNA and found a person( who did the DNA) who found his sperm donor.
He must have met him, cause he did not seem happy about meeting him. This is a problem with sperm donors, as it is with adoptions. Lot of parents don’t want anything to do with their children and some are really good reunions with their children.

In the play, “Inherit the Wind”, the Clarence Darrow character has a wonderful speech where he talks about the invention of the telephone. I wish I could quote it, but I will try to paraphrase. He says that the telephone is like climbing to the top of a steep hill. We look back on the quiet privacy before the phone, but we look forward to the new levels of communication it offers. The technological advances of DNA testing are very similar. That privacy bird has flown far away and can’t be brought back, so we need to continue to look forward..

Someone might explain to the Professor the meaning of the expression that “the train has already left the station” on his academic concern! Maybe the Professor could focus some of his tax-payer funded job working on something useful.

Quick gut reaction is that donors who wish anonymity should not donate. And the mother (parents) should be clear with the child as to where she came from and why. If the husband isn’t able to fertilize the egg and they both want a child, there are three choices: use a sperm donor, foster or adopt. But a child, particularly one from a line of medical issues (high blood pressure, diabetes, etc.) should be aware of these issues in order to look for the signs in his/her life and modify them by lifestyle or medications. We’re not talking about a doll or toy, but a real live person and they should have the needed information. If I’m not willing to provide that (and I’d have to be frank with my family, as like the parents should be frank with their child)), then I shouldn’t donate.
What to do about the past? It’s a real mess, as has been mentioned will probably end up in court and even after a decision is made, that won’t end the problem.

He has been involved in genealogy for more than 35 years. He
has worked in the computer industry for more than 50 years in hardware,
software, and managerial positions. By the early 1970s, Dick was already
using a mainframe computer to enter his family data on punch cards. He
built his first home computer in 1980.